In February, my teen was appointed International Junior Miss Kansas Teen. She’s not your typical pageant girl. In fact, she’s not your typical teenager at all. In December 2014, she spit up a blob of blood in a parking lot and became seriously ill. It took us two years and countless hospitalizations, doctors visits and millions of dollars of our insurance companies money to get a diagnosis. She has three conditions on the rare disease list: Ehlers Danlos Syndrome, POTS and PLEVA. She also has chronic migraines. Yet, she is a fighter and refuses to be defined by illness or let go of her dreams. She’s also an incredibly generous spirit.
Even before she received her crown, she declared that she would spend the entire year volunteering to bring awareness to terminal and chronic illness. In fact, she contacted a local charity herself to create her first opportunity. She volunteered at the Inclusion Connections fashion show and immediately fell in love with the mission of the organization. This summer, she’ll help on Tuesday at their summer camp and at their Bowl-O-Rama.
So, why am I telling you this? My teen is an extraordinary young lady who wants to give back and make a difference in the world. Despite the fact that her life is a challenge every single day, she’s devoted much of her free time to helping others. She proved that at her next volunteer gig- the Dream Factory Gala where we were blessed to see three chronically ill kids have their dreams granted.
The Susan G. Komen Foundation is a charity near and dear to my heart as Susie was one of my mom’s friends and Jaiden loves to support. We put together a group of pageant title holders to be pink ladies at the Pink Promise conference. She was on stage to present the award to the breast cancer survivor that had beat it the longest.
Next up, was Noah’s Crown Town 5K. Once again, Rosie contacted them by herself to set up her volunteer opportunity and she didn’t go small. We helped with race registration for two days and if it wasn’t for cold weather and a torrential downpour, she would’ve been at the race (we couldn’t risk her getting sick). She has one of Noah’s pins on her sash and has verbally committed to help again next year.
This past weekend, my teen coordinated an event for Alex’s Lemonade Stand by herself to benefit childhood cancer research. She enlisted the help of some friends and asked for donations in front of a Walgreens for hours. They raised $400 for the organization.
For my teen, winning a title has never been about being a beauty queen. For her, it’s about bringing awareness to illness and disability and giving back. But, now she needs a little help of her own.
With high medical bills, we’re struggling to figure out how to pay for the trip and while she has sponsors, we’re still falling short. I think she deserves to be able to take the trip and not have to worry about the money and enjoy herself. She’s given so much to other people. We’d love it if you’d consider giving back to her. You can donate directly through her Go Fund Me page or contact me directly at firstname.lastname@example.org if you’d like to play a bigger role as a sponsor. We appreciate your help!